Essential Thrombocythemia (ET) and viruses

Hello,

I have some questions about having high platelets. My levels increased from 500's to 600's, from 2022 to 2023. I would like to know if Vitamin C will help decrease the platelet since I've also read that it could contribute to increasing the platelet range. Also, in having 600s platelets, is it recommended to visit a hematologist as soon as possible since I've been told to wait 4 months to see if the platelets decrease with taking a baby aspirin per day?
Thank you.

Yes, I believe that the same thing happened to me. My high platelets were discovered in July of 2022. My primary doctor tested me every 3 months. Platelets kept increasing from 500's to 600's. That's when I was sent to a Hematologist/Oncologist and diagnosed with ET in Dec. 2022. The weird thing is that my Dermatologist said that she has noticed an increase in the number of her patients who have blood disorders and weird rashes.

I think there is a correlation from the vaccine and ET, but how can we prove it? The vaccine supposedly is some type of gene therapy.

Hello there, I was diagnosed with ET in the summer of 2022. My platelet count was over 700 at that time. My hematologist/oncologist put me on 500 HU and a baby aspirin per day. This brought my platelets down to 500. My oncologist then put me on 1000 MG’s of HU and one baby aspirin per day and this brought it down to 420. My husband and I caught Covid. After five days my husband tested negative and did not feel that bad. It took me two weeks to test negative with Covid, and I felt much worse than he did. I am very tired each day and have some dizziness. I did take the Covid vaccine and booster prior to developing ET. I am now reading and looking at some studies on the Covid vaccine. These studies are showing that the vaccine will cause platelets to change. There are many articles about Covid vaccine and platelets if you Google it. Can anyone relate to this Connection between Covid vaccine and change in your platelets. This is so very upsetting.

Hi shhanks. Welcome to the site.

After I had seven vaccines (2 Moderna, 1 booster, 2 Shingrix, flu, Tdap) in 2021 I developed psoriasis on my scalp and some on legs. First time I ever had a skin condition and I am 78. I believe they affected my immune system.

Then in 2022 I was diagnosed with ET JAK2. I was put on 500 mg HU every day…had daily headaches. I was taken off HU for a few weeks (I take a blood thinner so was protected). I restarted 500 mg HU but every other day. My platelets were down from high of 735 to 434 at last CBC. My CBC are monthly so I hope I am stable and can continue every other day.

I had Covid at the beginning of 2022 and one bad bronchitis…otherwise healthy.

This is a great website and Lori, our moderator, has great input.

Best wishes, Eileen

I'm so sorry to hear that. I also don't seem to "bounce back" as quickly as I used too. I'm trying to do as much as possible to boost my immune system. My ability to exercise also seems significantly diminished. My Hem-Onc did tell me after I had bronchitis (that was a 3 week illness) that I could stop the HU for a few weeks if I got sick like that again. I also just took a two week HU hiatus when I went of vacation (with my Hem's approval)-I felt great-no nausea, less fatigue, less headaches. Maybe you could ask about a break from HU?

That's me. I am getting sick: Chills/sweating, nausea, headache, just plain feel awful, what seems to be about every few weeks. And seems like it is lasting longer and longer. Still feeling sick and it has been since Saturday night and its Thursday.

yes, my hemo didn't think my bone pain in shin and toes was from ET Jak2, but ????.I agree, Also breathlessness, but not cardio or pulmon.....and why did it just start?
I think we are in high risk group with supressed immunity. I don't think they know everything. ps....also nice support group on Facebook

I was diagnosed with JAK2 positive in 12/21. My platelets rose to high 700's and I was 59 so I was started on Hydroxyurea 9 months ago-first 500mg daily, the 500mg alternating with 1000mg and now on 1000 mg daily. My platelets are finally in the normal range but I have gotten sick at least 5 times since starting. I am a physician with four kids and 2 preschool aged grand children and NEVER got sick. One of the times I wound up in urgent care and then on steroids, antibiotics and an inhaler which has never happened in my life-even when I had COVID pre-vaccination. I don't have much to offer-but it is reassuring to me that I am not the only one experiencing this. My Hematologist keeps telling me HU is only "mildly immunosuppressive" but my body is telling me something else. I take Liposomal Vitamin C and zinc/daily, try to stay rested and am much more careful about being around sick people (ie preschool children) than I was before but it's frustrating. I'm so excited to find this discussion. It's hard to find information let alone people who understand what you're going through.

@loribmt
I’m so happy you have found the help you needed for your blood cancer! I know there’s hope for all this, and I actually don’t normally feel too many ramifications from this diagnosis. It’s mostly just fatigue. It’s depressing though, not to bounce back from a simple cold.
My last CBC was all good-everything in the normal range, except the platelets. I’m getting bloodwork every 3 months now. First hematologist wanted to start me on Hydroxyurea right away. I went for a second opinion and the second hematologist agreed with me that the Hydroxyurea recommendation was perhaps premature in my case. I know that things could change, depending on future blood work. Just trying to enjoy not having to take that drug, for the time being…
Again, thank you for your input and support. 😊

With ET, from my understanding, with your bone marrow producing too many platelets, it is also crowding out the vital red and white blood cells. So with a reduction in the white blood cells, which are the guardians of our body, your immunity is compromised. There are defective cells as well and that also plays into the equation. A lower amount of red cells will leave you feeling more tired.
How were your other blood numbers on your last CBC?

It’s a relief you’re negative for Covid. So hopefully this current cold will subside fast and get you back to normal. I don’t have ET but I did have an aggressive blood cancer 3 years ago. Totally in remission now after a bone marrow transplant. But one of the hardest things I had to learn is to “listen to my body”. So if you’re tired, make sure you take naps during the day. Eat healthy, of course, but resting is key. Also drink plenty of water each day, that helps quite a bit.
Life is different now but it doesn’t mean worse. It just means different. The cool thing as humans, we can learn to accept, adapt and move on. Your new diagnosis doesn’t have to define who you are. ☺️ Accept the changes, you’ll learn what your body can handle and then start fresh from there.

I’m happy you found Connect too! It’s quite an amazing forum for support, encouragement and help from others who are going through similar challenges.
What’s your schedule for blood work?